Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

More young adults (YAs) with life limiting conditions (LLC) are surviving into adulthood as earlier diagnosis and improved medical management in pediatric care lead to higher rates of survival for cancer, congenital heart and neuromuscular conditions. When these YAs leave pediatric care, they leave behind comprehensive and coordinated health, social and education services for uncoordinated adult systems, with limited access to palliative services they received in pediatric care.

YAs with LLCs will benefit from a public health palliative approach to care. This approach better matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. Public health palliative care is a blended provision of health care and community services based on evidence that health care is most effective and least expensive when offered in conjunction with a complement of services that reflects social determinants of health and well-being. For YAs with LLCs, these resources will support their health, social, vocational, independent living, and educational goals to maximize their opportunities in an abbreviated time frame.


The objectives of this workshop are to:

1. Provide an overview of the young adult population with palliative care needs.
2. Discuss current care of this population.
3. Highlight results from three recent projects to examine and address needs of this population.
4. Dialogue with audience about other programs, initiatives, or ideas to address the needs of this population.

We look forward to robust conversations and ideas from your practice and research.

Good Practices in the field of Health Promotion and Chronic Disease Prevention

Background; Approach and Concept; Methods (Country reviews; Definition of Good Practice Criteria; Identification of Good Practice Examples; Identification of transferable practices / elements); Outputs

Joint Action CHRODIS Work Package 5 - Good practices in the field of health promotion and chronic disease prevention across the life cycle: outcomes at a glance

Associated Partners in the Work Package 5: National Health Institute Doutor Ricardo Jorge (INSA), Portugal (Luciana Costa)

Introducing the National Library for Health Skin Conditions Specialist Library

Background: This paper introduces the new National Library for Health Skin Conditions Specialist Library http://www.library.nhs.uk/skin. Description: The aims, scope and audience of the new NLH Skin Conditions Specialist Library, and the composition and functions of its core Project Team, Editorial Team and Stakeholders Group are described. The Library's collection building strategy, resource and information types, editorial policies, quality checklist, taxonomy for content indexing, organisation and navigation, and user interface are all presented in detail. The paper also explores the expected impact and utility of the new Library, as well as some possible future directions for further development. Conclusion: The Skin Conditions Specialist Library is not just another new Web site that dermatologists might want to add to their Internet favourites then forget about it. It is intended to be a practical, "one-stop shop" dermatology information service for everyday practical use, offering high quality, up-to-date resources, and adopting robust evidence-based and knowledge management approaches.

Chronic Diseases: Chronic Diseases and Development 2 Health, agricultural, and economic effects of adoption of healthy diet recommendations

Transition to diets that are high in saturated fat and sugar has caused a global public health concern as the pattern of food consumption is a mayor modifiable risk factor for chronic non-communicable diseases Although agri food systems are intimately associated with this transition, agriculture and health sectors are largely disconnected in their priorities policy, and analysis with neither side considering the complex inter relation between agri trade patterns of food consumption health, and development We show the importance of connection of these perspectives through estimation of the effect of adopting a healthy diet on population health, agricultural production trade the economy and livelihoods, with a computable general equilibrium approach on the basis of case studies from the UK and Brazil we suggest that benefits of a healthy diet policy will vary substantially between different populations, not only because of population dietary intake but also because of agricultural production trade and other economic factors

Efficacy of entecavir and tenofovir in chronic hepatitis B under treatment in the public health system in southern Brazil

There are about 350 million hepatitis B virus (HBV) carriers worldwide and chronic HBV is considered a major public health problem. The objective of the present study was to assess the effectiveness of the nucleos(t)ide analogues tenofovir (TDF) and entecavir (ETV) in the treatment of chronic HBV. A cross-sectional study was carried out from March-December 2013, including all patients with chronic HBV, over 18 years of age, undergoing therapy through the public health system in southern Brazil. Only the data relating to the first treatments performed with TDF or ETV were considered. Retreatment, co-infection, transplanted or immunosuppressed patients were excluded. Six hundred and forty patients were evaluated, of which 336 (52.5%) received TDF and 165 (25.8%) ETV. The other 139 (21.7%) used various combinations of nucleos(t)ide analogues and were excluded. The negativation of viral load was observed in 87.3% and 78.8% and the negativation of hepatitis B e antigen was achieved in 79% and 72% of those treated with ETV or TDF, respectively. Negativation of hepatitis B surface antigen was not observed. There was no occurrence of adverse effects. This is a real-life study demonstrating that long-term treatment with ETV and TDF is both safe and effective.

The Impact of Education and Socioeconomic and Occupational Conditions on Self-Perceived and Mental Health Inequalities Among Immigrants and Native Workers in Spain

There is limited evidence on the influence of social determinants on the self-perceived and mental health of immigrants settled at least 8 years in Spain. The aim of this study was to examine differences between workers related to migrant-status, self-perceived and mental health, and to assess their relationship to occupational conditions, educational level and occupational social class, stratified by sex. Using data from the Spanish National Health Survey of 2011/12, we computed prevalence, odds ratios and explicative fractions. Mental (OR 2.02; CI 1.39–2.93) and self-perceived health (OR 2.64; CI 1.77–3.93) were poorer for immigrant women compared to natives. Occupational social class variable contributes 25 % to self-perceived health OR in immigrant women. Settled immigrant women workers are a vulnerable group in Spain.

Development of the Andalusian Registry of Patients Receiving Community Case Management, for the follow-up of people with complex chronic diseases.

Background: Complex chronic diseases are a challenge for the current configuration of Health services. Case management is a service frequently provided for people with chronic conditions and despite its effectiveness in many outcomes, such as mortality or readmissions, uncertainty remains about the most effective form of team organization, structures, and the nature of the interventions. Many processes and outcomes of case management for people with complex chronic conditions cannot be addressed with the information provided by electronic clinical records. Registries are frequently used to deal with this weakness. The aim of this study was to generate a registry-based information system of patients receiving case management to identify their clinical characteristics, their context of care, events identified during their follow-up, interventions developed by case managers, and services used. Methods and design: The study was divided into three phases, covering the detection of information needs, the design and its implementation in the healthcare system, using literature review and expert consensus methods to select variables that would be included in the registry. Objective: To describe the essential characteristics of the provision of ca re lo people who receive case management (structure, process and outcomes), with special emphasis on those with complex chronic diseases. Study population: Patients from any District of Primary Care, who initiate the utilization of case management services, to avoid information bias that may occur when including subjects who have already been received the service, and whose outcomes and characteristics could not be properly collected. Results: A total of 102 variables representing structure, processes and outcomes of case management were selected for their inclusion in the registry after the consensus phase. Total sample was composed of 427 patients, of which 211 (49.4%) were women and 216 (50.6%) were men. The average functional level (Barthel lndex) was 36.18 (SD 29.02), cognitive function (Pfeiffer) showed an average of 4.37 {SD 6.57), Chat1son Comorbidity lndex, obtained a mean of 3.03 (SD 2.7) and Social Support (Duke lndex) was 34.2 % (SD 17.57). More than half of patients include in the Registry, correspond lo immobilized or transitional care for patients discharged from hospital (66.5 %). The patient's educational level was low or very low (50.4%). Caregivers overstrain (Caregiver stress index), obtained an average value of 6.09% (SD 3.53). Only 1.2 % of patients had declared their advanced directives, 58.6 had not defined the tutelage and the vast majority lived at home 98.8 %. Regarding the major events recorded at RANGE Registry, 25.8 % of the selected patients died in the first three months, 8.2 % suffered a hospital admission at least once time, 2.3%, two times, and 1.2% three times, 7.5% suffered a fall, 8.7% had pressure ulcer, 4.7% had problems with medication, and 3.3 % were institutionalized. Stroke is the more prevalent health problem recorded (25.1%), followed by hypertension (11.1%) and COPD (11.1%). Patients registered by NCMs had as main processes diabetes (16.8%) and dementia (11.3 %). The most frequent nursing diagnoses referred to the self-care deficit in various activities of daily living. Regarding to nursing interventions, described by the Nursing Intervention Classification (NIC), dementia management is the most used intervention, followed by mutual goal setting, caregiver and emotional support. Conclusions: The patient profile who receive case management services is a chronic complex patient with severe dependence, cognitive impairment, normal social support, low educational level, health problems such as stroke, hypertension or COPD, diabetes or dementia, and has an informal caregiver. At the first follow up, mortality was 19.2%, and a discrete rate of readmissions and falls.

Eight month post program completion: change in risk factors for chronic disease amongst participants in a four-month pedometer workplace health program

Objective: To evaluate whether participation in a 4-month, pedometer-based, physical activity, workplace health program is associated with long-term sustained improvements in risk factors for type 2 diabetesand cardiovascular disease, 8 months after the completion of the program.Design and Methods: A sample size of 720 was required. 762 Australian adults employed in primarily sedentary occupations and voluntarily enrolled in a workplace program were recruited. Demographic, behavioral, anthropometric and biomedical measurements were completed at baseline, 4 and 12 months.Results: About 76% of participants returned at 12 months. Sustained improvements at 12 months were observed for self-reported vegetable intake, self-reported sitting time and independently measured bloodpressure. Modest improvements from baseline in self-reported physical activity and independently measured waist circumference at 12 months indicated that the significant improvements observed immediately after the health program could not be sustained. Approximately half of those not meetingguidelines for physical activity, waist circumference and blood pressure at baseline, were meeting guidelines at 12 months.Conclusions: Participation in this 4-month, pedometer-based, physical activity, workplace health program was associated with sustained improvements in chronic disease risk factors at 12 months. These results indicate that such programs can have a long-term benefit and thus a potential role to play in population prevention of chronic disease.

Chronic condition management and self-management in Aboriginal communities in South Australia : outcomes of a longitudinal study

OBJECTIVES: This paper describes the longitudinal component of a larger mixed methods study into the processes and outcomes of chronic condition management and self-management strategies implemented in three Aboriginal communities in South Australia. The study was designed to document the connection between the application of structured systems of care for Aboriginal people and their longer-term health status. METHODS: The study concentrated on three diverse Aboriginal communities in South Australia; the Port Lincoln Aboriginal Health Service, the Riverland community, and Nunkuwarrin Yunti Aboriginal Health Service in the Adelaide metropolitan area. Repeated-measure clinical data were collected for individual participants using a range of clinical indicators for diabetes (type 1 and 2) and related chronic conditions. Clinical data were analysed using random effects modelling techniques with changes in key clinical indicators being modelled at both the individual and group levels. RESULTS: Where care planning has been in place longer than in other sites overall improvements were noted in BMI, cholesterol (high density and low density lipids) and HbA1c. These results indicate that for Aboriginal patients with complex chronic conditions, participation in and adherence to structured care planning and self-management strategies can contribute to improved overall health status and health outcomes. CONCLUSIONS: The outcomes reported here represent an initial and important step in quantifying the health benefits that can accrue for Aboriginal people living with complex chronic conditions such as diabetes, heart disease and respiratory disease. The study highlights the benefits of developing long-term working relationships with Aboriginal communities as a basis for conducting effective collaborative health research programs.

Statistically modelling the relationships between Type D personality and social support, health behaviors and symptom severity in chronic illness groups

OBJECTIVE: The study aimed to develop a predictive model of how Type D personality influences health behaviours, social support and symptom severity and assess its generalisability to a range of chronic illnesses.

DESIGN: Participants were classified as either healthy (n = 182) or having a chronic illness (n = 207). Participants completed an online survey measuring Type D and a range of health-related variables. Chronic illness participants were classified as having either a functional somatic syndrome (i.e. chronic fatigue syndrome or fibromyalgia), where the underlying pathological processes were unclear, or illnesses such as type 2 diabetes, osteoarthritis or rheumatoid arthritis, where the causes are well understood.

MAIN OUTCOME MEASURES: Outcome measures were health behaviours, social support and both physical and psychological symptoms.

RESULTS: The rate of Type D was higher in chronic illness participants (53%) than in healthy controls (39%). Negative affectivity (NA) and social inhibition (SI) both correlated with outcome measures, although NA was generally the stronger predictor. Using NA and SI as independent subscales led to superior prediction of health outcomes than using categorical or continuous representations.

CONCLUSION: Findings suggest that the relationship between Type D and health outcomes may generalise across different chronic illnesses.

Approaches to population health care : the emerging context!

This paper provides a review of recent developments in population-based approaches to community health and explores the origins of the population health concept and its implications for the operation of health service management. There is a growing perception among health professionals that the key to improving health outcomes will be the implementation of integrated and preventive population-based resource management rather than investment in systems that respond to crises and health problems at the acute end of the service provision spectrum only. That is, we will need increasingly to skew our community health and welfare investments towards preventive care, education, lifestyle change, self-management and environmental improvement if we are to reduce the rate of growth in the incidence of chronic disease and mitigate the impact of these diseases upon the acute health care system. While resources will still need to be devoted to the treatment and management of physical trauma, infectious diseases, inherited illness and chronic conditions, it is suggested we could reduce the rate at which demand for these services is increasing at present by managing our environment and communities better, and through the implementation of more effective early intervention programs across particular population groups. Such approaches are known generally as population health management, as opposed to individual or illness - based health management' or even public health - and suggest that health systems might productively focus in the future on population level causation and not just upon disease-specific problems or illness management after the fact. Population health approaches attempt to broaden our understanding of causation and manage health through an emphasis on the health of whole populations and by building healthy communities rather than seeing "health care" as predominantly about illness management or responses to health crises. The concept also presupposes the existence of cleaner and healthier environments, clean water and food, and the existence of vibrant social contexts in which individuals are able to work for the overall good of communities and, ultimately, of each other.

Chronic disease self-management in Aboriginal communities : towards a sustainable program of care in rural communities

The Chronic Disease Self-Management (CDSM) strategy for Aboriginal patients on Eyre Peninsula, South Australia, was designed to develop and trial new program tools and processes for goal setting, behaviour change and self-management for Aboriginal people with diabetes. The project was established as a one-year demonstration project to test and trial a range of CDSM processes and procedures within Aboriginal communities and not as a formal research project. Over a one-year period, 60 Aboriginal people with type-2 diabetes in two remote regional centres participated in the pilot program. This represents around 25% of the known Aboriginal diabetic population in these sites. The project included training for four Aboriginal Health Workers in goal setting and self-management strategies in preparation for them to run the program. Patients completed a Diabetes Assessment Tool, a Quality of Life Questionnaire (SF12), the Work and Social Adjustment Scale (WASAS) at 0, 6 and 12 months. The evaluation tools were assessed and revised by consumers and health professionals during the trial to determine the most functional and acceptable processes for Aboriginal patients. Some limited biomedical data were also recorded although this was not the principal purpose of the project. Initial results from the COAG coordinated care trial in Eyre suggest that goal setting and monitoring processes, when modified to be culturally inclusive of Aboriginal people, can be effective strategies for improving self-management skills and health-related behaviours of patients with chronic illness. The CDSM pilot study in Aboriginal communities has led to further refinement of the tools and processes used in chronic illness self-management programs for Aboriginal people and to greater acceptance of these processes in the communities involved. Participation in a diabetes self-management program run by Aboriginal Health Workers assists patients to identify and understand their health problems and develop condition management goals and patient-centred solutions that can lead to improved health and wellbeing for participants. While the development of self-management tools and strategies led to some early indications of improvements in patient participation and resultant health outcomes, the pilot program and the refinement of new assessment tools used to assist this process has been the significant outcome of the project. The CDSM process described here is a valuable strategy for educating and supporting people with chronic conditions and in gaining their participation in programs designed to improve the way they manage their illness. Such work, and the subsequent health outcome research planned for rural regions, will contribute to the development of more comprehensive CDSM programs for Aboriginal communities generally.

Next steps in the logic of consumer-led self-management : translating chronic condition self-management programmes (CCSM) into lifestyle management programmes for young people

The techniques applied in chronic condition self-management programmes (CCSM) to support patients with chronic conditions are basic counselling and communication strategies that would benefit people at all stages of life and wellness. The question being explored here is why, as a society, we wait until people develop essentially preventable chronic conditions before helping them to develop the life skills they need to manage their lives and their human interactions better rather than working to avoid or prevent many chronic conditions that develop as a result of people lacking such skills? If we were to teach coping and managing skills to everyone in a supportive and structured way, using the peer-led teaching and learning strategies and basic counselling and education processes that have been shown to be successful for other older groups with chronic illness, the overall population impact would be more significant. Therefore why wait until people have chronic conditions before empowering them with basic life management techniques? Do people need to be sick before they can be motivated to live more effective lives? Is sickness the main stimulus for triggering health-related behaviour change or can other factors in people’s lives serve to inform and motivate lifestyle change?